Early November Update


Well, it has again been a while since I’ve updated my status, so here goes (I’ll try not to ramble on too much). Actually, have not been a lot of changes.


I’ve finished my 4th round of chemo last weekend. Chemo rounds really affect me the most in the first week after treatment…I am pretty tired every day. But, by the second week things are getting better and by the third, I’ve almost (but not quite) recovered to my pre-chemo state. Of course, then it is time for another round, so as long as I’m in treatment I never really fully recover. But, unlike the first major chemo I did, the drop each round is much less…that first time I don’t think I could have taken another round of chemo and continued to be able to walk. But, that chemo was much harsher on my system than the cocktail I’m on, now.

Last weekend was my last scheduled round, for now. That could (and likely will) change after next week. On 11/7 I’ll have a CT scan to see how the lungs/liver tumors look and also see if anything else is cropping up. Once we get those results, decisions will be made as to how to proceed with treatments. I really wish one of the “cancer vaccine” trials fit my profile. Many of those are showing amazing results in clearing tumors throughout the body without systemic impairment. What I’m on now, while somewhat targeted to only the tumors, still knocks down my entire immune system and does a number on my red-blood cell count.


I ordered a hands-free speaking valve and assorted accessories from a medical supply company. They implied in email that this would be covered by insurance, so I went with a brand that I’m not that fond of. They did say I’d have to file the claim myself. Should have been a clue. I spent nearly $1,000 on supplies, only to find it was all out-of-network (thus out-of-pocket). Also, it doesn’t work very well…still having to use a hand to my neck to get the voice (such as it is) to work. Basically, the device has a little flap that closes when you exhale hard…which makes the air go into the little valve going into my esophagus instead of out my neck.

So, I’ve just ordered my preferred brand, knowing that it also will not be covered by insurance (and around $600, but I’ve tried it in the doctor’s office and it seems to work much better). Seems that routine supplies (basically air filters that snap onto an adhesive base over the stoma and certain types of those bases) I can get w/insurance coverage. Of course, those are also the least expensive components.


The good news on my shoulder is that the accessory nerve that enervates the trapezius muscle is coming back to life. The bad news is that it was “down” for so long, my trapezius is severely wasted. So, I’m going to Physical Therapy every week and getting a set of exercises to help restore normal shoulder function. There are about 12 different exercises, most of which I am supposed to do while laying down. Right now, if I lay down, I go to sleep. So, my at-home exercising is not as frequent as it should be. But, even with that, I can tell a positive difference. Pain in the shoulder is less. And, I can see a bit of muscle tone coming back (albeit very slowly). Hopefully will be able to do more as my post-chemo stamina returns.


My weight is definitely up from the low dive to 121 lbs after that first chemo round (and week-long hospital stay). I got up to 131, but this week have dropped back down to 127…but a drop the week after chemo seems to be normal. I expect I’ll gain a bit more over the next two weeks. Main issues is just not being hungry. I’ve avoide outright nausea, but have never been one who could eat when I don’t feel hungry. Dronabinol is helping with appetite. Also, the steroids I take for a few days after chemo probably keep me from losing even more. All I can do is eat what I can. Trying still to stay low on the sugars and prioritize proteins, but some things (those things usually being proteins) just taste aweful, even with the lactoferrin supplements (which have definitely improved my sense of taste…but not to perfection).


Steatorrhea (fatty stools) continue with maybe a slight improvement. I’m beginning to wonder if it might not be associated with the liver tumor(s). Bile (which digests fats) starts out in the liver, moves to the gallbladder, then is purged into the intestine when you eat. Hopefully treating the tumor in the liver, as we’ve been doing, can help to resolve this. Mostly it is a concern for fat-soluble vitamin absorption (Vitamins D, E, A, and K).


Hey, something unrelated (mostly) to health issues! My contractor finished the remodel on my kitchen and baths. I’m digging the full-sized shower in my master bath…so much nicer than stepping into a tub to take a shower. Also looks so much better. Tomorrow, new kitchen appliances are going to be installed, which will almost finish the domestic re-organization. What is left is to put everything back into the cabinets where they belong (didn’t want to do that until I got the new appliances in and considered what other changes I might want to make).

Well, I’ve also been too fatigued to really do much on the putting stuf where it belongs front, and up to a couple of weeks ago my shoulder really limited my ability to lift things into the upper cabinets (even lightweight stuff).

Next up, I’m disposing of a home gym that has been in a front bedroom mostly unused for a couple of years. I think it will be gone, tomorrow. Then the plan is to clear out the other stuff stored in that bedroom (which is mostly going to the curb). Then, take the hall bedroom and clear it out, using the first bedroom to put stuff I want to keep. Tentative plan is to put some photo studio stuff into that bedroom. Next will be to clear some things out of the living room into one of those bedrooms to unclutter the front of the house. Then, I should be finished (I’m guessing some time in 2022).

I’ve been in the house for 35 years and have way too much old, useless stuff sitting here and there. Not a hoarder…I have no issue getting rid of this stuff. But, things I see every day tend to become invisible to me over time…occasionally I’ll look with fresh eyes and “oh, crap, I need to clear some of this stuff out.” We recently had an electronics recycling day at work, and I think I would have won the prize for most stuff recycled…big CRT TV, computer monitors, and old PC components, some over a decade out of date.


I am still coming to work every day. The week after treatment, those days are a bit shorter…I can get here early, but if I wait to late to leave, driving home becomes dangerous. I have fallen asleep at a stop light one time when I pushed it a bit far and woke up to horns honking and a green light. I’m sure they assumed I was texting.

Productivity is not up to par. Hard to concentrate when fighting drowsiness. But, still effective enough. My main concern is staying away from sick people as the flu season progresses. I did get flu, pneumonia, and shingles vaccines this year, so have some protection. But, chemo knocks down the immune system overall, so unsure exactly how much protection I will have. Have already had a few people in the office come down with what was probably the flu, but I stayed well away from them (and they me).

When I was going through chemo last year, I worked from home nearly the entire month of January to avoid getting sick. Trying to keep as much office time as I can this year, having missed so much due to hospitalization already (nearly 3 months in the hospital this year).


Well not that short of a post. But, at least I gave you headings so you could just read what you might find interesting. Really next up for me is wait and see what the CT fairy brings next week. Try to eat more. Try to do my therapeutic exercises more. And maybe post a bit more often so that these are shorter.

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